Sunday, November 21, 2004

"Why not change minds instead of bodies?" asks Alice Domurat Dreger in her new book in reference to people who are born with bodies different from those of us who consider ourselves normal. Her primary subject is conjoined twins, one of the most extreme examples, but she also brings into the story people with cleft lips, dwarfs, giants, and hermaphrodites. Since we cannot conceive of being willing to live with these abnormalities, we usually think that such conditions should be fixed by modern medicine, if possible. That, says Dreger, is the problem. Normalization procedures may sometimes be the best choice, but they are not the only option. Many people with unusual anatomies are completely comfortable with their bodies and derive their personal identities from them. It is the discomfort of their families and communities that most often exerts the pressure to change them.

Conjoined twins are in some ways the most urgent issue to confront, since high-risk separations are more often life-or-death situations than are other corrective procedures. Dreger understands the reasons for such separations, especially the fact that modern medical techniques have made them possible and usually successful, but she challenges our idea of what constitutes success. She finds it is often limited to the brief survival of one or both twins or subjecting survivors to years of hospitalizations and surgeries. Separations that require the deliberate sacrifice of one child in order to increase the viability of the other also force us into extremely difficult ethical decisions.